Paul's Heart

Life As A Dad, And A Survivor

19 Apr 2017

She Calls Me Lucky


***author’s note – this post was actually drafted on Monday, April 17th.  I paused midway through the post, when I received news that a fellow long term cancer survivor that I have known most of my survivorship had passed away.  The second part of this post was very difficult to write, and I want to stress, that for the many “newbies” of Hodgkin’s survivors, because of long term survivors, a better treatment regimen is used to lessen the severity of late effects, and a more efficient follow-up protocol exists for you as well.

I had a totally different story in mind for today.  Today marks the 9th anniversary of my double bypass, caused by late effects from radiation and chemotherapy treatments for Hodgkin’s Lymphoma.  I wanted to talk about a conversation that I had with one of my daughters.  They were not born when I battled my cancer.  They were less than five years old when I had this surgery.  And a few years later, they would witness me being rolled out of my house at 4am on an ambulance stretcher, eventually diagnosed with septic pneumonia.

Now with my children older, I have decided to tell them about what I had gone through in my past.  They are learning about the body in Health class in school, and the various systems of the body and diseases we face.  With what they have learned in school thus far, it gives them a totally different perspective knowing someone who has faced a deadly situation three times.  To which my oldest daughter responded, “you’re really lucky Daddy.”

Because it came from my daughter, I know it was a sincere and genuine compliment.  And to be honest, had it been anyone else throwing the “lucky” comment my way, I would respond back that I do not feel lucky at all, far from it.  But clearly, my daughter sees something in my survival that I cannot.

Most of us who have dealt with Hodgkin’s have been told, “if you are going to get a cancer, Hodgkin’s is the one to get” inferring the luck of the cancer diagnosis.  We do not feel lucky.  When told that I needed to have open heart surgery for a double bypass because the main artery going to my heart was restricted 90%, my cardiologist told me I was lucky.  I prevented my fatal heart attack before it happened by coming in when I did, because it was not a question if it would happen, but when.  The fact that I had symptoms for four months… luck had nothing to do with it.

I have many more examples.  The last thing I feel is lucky.  But as I do for so many in my life, I take on the description of “lucky”.  It makes people happy to think that there is some force taking care of me.  It allows me to not burden anyone with the many health issues I face, all caused by the treatments that were supposed to save my life.  I am so good at it, even one of my doctors once said, “you look great.”  And then I told him how I felt, test results and exams confirmed, and then our conversation dealt with reality.  But just as what the doctor felt he saw, is what I present to anyone who looks at me.  I do what I can to make sure that everyone is protected.  As another doctor once put it, my post cancer survival is about managing the late effects… they cannot be cured or reversed.

Part 2

A post came across my newsfeed, which put the brakes on this post.  A friend and fellow long term Hodgkin’s Lymphoma survivor, had just passed away from one of the various late effects that she had to deal with.  She was just 50 years of age.

I had already been working on a post for her revolving around her struggles to get approved for a much needed heart transplant, that she had been denied twice.  You see, though diagnosis were different, both of our hearts had been damaged by radiation and chemotherapy treatments for our Hodgkin’s.  And I will get that story done soon.  Instead, now I will do as I have done for so many others, work on posting a tribute to someone who played such an important part in learning about , dealing with, and living with, the late effects of treatments that saved our lives, clearly at the cost of health in the future.

 

But here is the reality… luck has nothing to do with our survival.  Of the four photos above, only I am still here.  All three of us dealt (deal) with damage to our hearts.  On the outside, we all looked fine.  And for the most part, we never let this issue show as best as we could (and most of us have even more issues).  All that mattered on the outside, you did not have to worry about us.  We did not ask for pity, just understanding.  We had/have bad days, but we did our best not to let it show.  This is has nothing to do with luck.  In fact, for me, it only raises the level of survivor guilt that I battle every day even higher.

Those of us, who hold our “Pandora’s Box” in our hands, who actually are aware of the many issues that we deal with because we have found doctors who “get” that our issues are not simply about “just getting older”, go through our survivorship in a “maintenance” mode, the majority of our issues cannot be resolved because the risk of correction is worse than the risk of the diagnosis itself.  In other words, we must wait and watch.  We have baselines, and then annual tests show the progression of our issues, and then, once the risk of correction is less than the diagnosis, then we can hope for help.  Or as my latest friend, lost hope.  She wanted the heart transplant, which was her only chance to live at this point.  After being turned down once, her level of optimism also dropped, as did her heart function.  She only had the will to try one more time, having lost that bid also.  It appeared there were increased risks associated with her complicated Hodgkin’s history, and was denied a second time.  But she did want the transplant anyway.  Having been turned down again, she came to terms that there would be no more opportunities.

I do not feel lucky at all.  And there are many more other friends that I have lost from my world of Hodgkin’s survivors, than those pictured above.  While it is nice, to have friends who try to encourage living with a “positive” frame of mind, the reality is, it is important that I am aware of what my body has become.  If I am to have any chance of an even longer survivorship, I need to be aware of where my body is at in its progression of late effects.

The reality is this though, it is no longer good enough, just to be able to find a doctor who has finally been educated on diagnosing and managing these issues, sure, that gets us through life, but what happens when our body gets to that point, that we finally need a major intervention, medicine still is not ready how to save our lives.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
14 Apr 2017

My Most Important Advocate


I cannot help it.  While most people worry about this time of year when it comes to income tax returns, for me, mid-April means so much more.  Every time at this time of year, I cannot help but think where I was, now nine years ago.

In all the chatter about health care by our government, there is hardly if any, conversation or concerns expressed about two of the most important players in health care, the patient and the doctor.

I am blessed to have the primary care physician that I have had.  In fact, in 51 years, I have had only 3 PCP’s, with my current one, caring for me for well over thirty years.  Since I am not mentioning her name, I am not calling her out about her age, so that is not rude.  But I have made it clear to her, that after she makes the decision to retire, there will be no more PCP’s for me.

I consider us friends though our company has been mostly limited to doctor-patient time for the most part.  There have been the occasional interactions outside of the office.  As a fellow adoptive parent, I have watched her children grow up.

I call her a friend also, because she has something that I demand most in a friend, trust.  Sure, she is my doctor, but other than my mother, no one, no one has any better clue about me, than my doctor.  The funny thing is, she also practices with her husband, who in that entire time, I have only seen him once as a patient.  If there is an occasion that has come up that I am receiving emergency care, my emergency bracelet says to contact her first.

Up until 2008, I was a fairly reliable patient, coming in once a year for a seasonal allergy shot.  Even the staff knew that I did not complain about health ailments.  I took no prescriptions.  If they saw me in the waiting room at any other time, everyone knew that something had to be wrong.

It was around this time, nine years ago, that I contacted her about an issue I was having, for nearly 4 months that I could recall.  It was a tightness in my chest, on the left side.  It appeared at the immediate commencement of any physical activity.  I ignored it, because after about a minute, the discomfort would go away.  But because it had been happening for so long, it became annoying.  Here is how the conversation… over the phone went…

Me:  Hey doc.  I was wondering if you could help me.  It’s just something weird and annoying.  I get this tightness in the left side of my chest whenever I start something physical.  It goes away after about a minute.  It has been happening for about 4 months, but is happening now, every time.  Do you have any idea how to get this to go away?

Just like my office visits,  expected this phone call to be that simple.

Doctor:  Well, given your medical history (Hodgkin’s Lymphoma), and you are a bit overweight, I think I am going to order a nuclear stress test.  We will see from there.

Ok.  At this point still fairly simple as far as I was concerned.  I had no idea the point behind the nuclear stress test, just as I had no idea when I was sent to an oncologist for suspected cancer.

But here is where our doctor/patient relationship paid off in huge dividends.

A nuclear stress test is not a cheap test.  It is also not normally ordered on people my age at the time (42).  But knowing that I do not complain about little aches and pains, she had an idea what she was suspecting.  And while many critics may complain about tests that doctors order that they feel are unnecessary or without looking at other options, my doctor went right for the big one.  Also, her office was the one that would make the appointment for me.  Because as anyone knows, if you have to make an appointment with a specialist, it could take weeks or even months.

My doctor, my best advocate.  The test would reveal a major blockage to my heart.  Though even this test would not disclose just how serious it really was.  The procedure I was immediately schedule for right after that stress test, would show that I was about to die, at any minute.  And that is not being dramatic.  That was a fact.

It was discovered that the main artery to my heart (the LAD), was scarred badly enough from radiation treatments that I had 18 years earlier for my Hodgkin’s, that the artery was restricted 90%.  I had what is often referred to as a “widow maker”.

There is more to this story as I have written in the past.  But my point for writing this today is this, our government is still trying what to do, or not do, in regard to health care.  And no one in our government is looking at availability or affordability.  No one is concerned about prevention.  And no one in our government is looking at the fact that our doctors are not even being taken into consideration when it comes to health care.

We have the quality doctors.  I know this personally.  But had she followed “guidelines” or “insurance requirements” instead of her being “just a doctor”, I would be dead.  She knows her patients.  She is the best person to make this call, not someone in an office somewhere in the country or even across the globe who has never seen me.  Yet, that is what is driving the health care argument – how to protect the greed of the insurance company, not giving the best and necessary care.

Health care should not be for the healthy and wealthy.  But that is how it is being treated.  But even with that horrible attitude, that does not change the fact, that doctors are not being given the ability to be a doctor, without being overruled by a penpusher from Wall Street.

In spite of all this, I still have the faith of my doctor, my friend, my advocate.  And until the day she chooses to retire, she will be my doctor, my final doctor.  I trust her with my life.  Because of her skill, her advocacy, I am here nine years later for my two young daughters.

I do not have permission to print her name, but she knows who she is.  I am forever grateful.

Posted in Cancer, Inspired By..., Side Effects, The Heart | Leave a comment
07 Apr 2017

A Strong Character Right From The Start


Whether a child is of biological origin, or adopted, character is something that is taught by the parent(s).  Right from the beginning, almost daily, I taught my daughters the values that I believed should be important to them.  And I did this by example, because those same values apply to me.  I want them to respect me biblically as per the ten commandments.  I want their unconditional love.  But I also want them to be honest, loyal, trusting.  I have told them that most of the qualities I have taught them will be an important part of who they are.

Another quality that I want my daughters to have, is empathy and concern for others.

My daughters definitely understand to have empathy for people when they are sick or injured.  They have witnessed personally some very extreme situations just with my health alone.

But it was during a scholastic athletic event a couple of years ago, that I saw an example from my oldest daughter, the quality of concern for someone else.

I have taught both daughters, that if they start something, they need to finish it.  Whether it be a project, a recreational sport, or anything extracurricular, they are to make and keep the commitment.  When applicable, if competition is expected, they are to give their best.  Their lives will not be judged on how many medals they possess, but how, they got them if they did.  They are to have fun what they do, and give their best effort.  But very importantly, never at the expense of someone else.

My oldest daughter was competing in a “triathalon” for her elementary school.  She had trained very hard running at the local track down the road from our house.  Every Saturday morning she had an opportunity to use the high school swimming pool to train.  And she already had enough experience riding her bicycle.  This was her second year competing and had done well her first time out not knowing what to expect.

She had slashed her way through the water, and had been about 2/3 of the way through the bicycle portion of the race, when another competitor wiped out.  My oldest had avoided most of the contact, but still had the collision.  My daughter got up, dusted herself off, and then directed her attention to the girl on the ground.  She was hurt.  There was never a doubt what my daughter was going to do.

My daughter stayed with the injured girl, while many of the adults around me noticed the accident and my daughter’s actions.  My daughter would remain there until official and medical personnel arrived at the crash site.  And even then, my daughter wanted to remain to make sure the girl was okay.  The adults on the scene, encouraged my daughter to continue on with the race, and she did.  My daughter finished the bicycle portion and then completed the run.  It never mattered to my daughter what place she finished, nor her time.

I could not have been more proud.

Now, as an older student, she finds herself at a slightly more competitive level as she is participating in her first official athletic season of girls track.  She is competing in two events, the shotput and 75 meter dash.  I have no doubt she will excel in both events.  She does not lack confidence.  And she does enjoy competing.  But it was during the dash, that something occurred, that once again would show her character.

As anyone who has done track before, the first few times launching off from the starting blocks can be quite awkward.  And though I know my daughter is quite fast, and she would probably rather start from a standing position, it was the starting block that got her start of the dash off to a rough start.  But it was her recovery, her refusal to give up, just as strong as her will to compete, that allowed her to finish the race, just a couple of lengths behind the pack of runners.  She could have just given up like a baseball batter grounding a ball down the baseline, but she did not quit.  She ran with everything she had.

I cannot wait to hear how she does the next time around.

Yes, I am very proud of the daughters that I have raised.  There is a lot more to go, but so far, they understand their character is going to define who they are, and how others see them.

Posted in Adoption, Education, Family and Friends, Recreation | Leave a comment

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